As I mentioned in a previous post, I have mobility issues, and regularly use a combination of crutches, a cane, or a wheelchair to get around. This is because if I was on my feet for more than a few minutes, my hips, knees, feet and lower back would start complaining, and then start screaming at me. In other words, it is painful for me to stand for more than a few minutes at a time. And the worst part of it was? I didn’t know why. Every GP and orthopaedic specialist I had seen could not explain why. I even once had this doctor insinuate I was faking it, just so I could use a wheelchair.
This week, after months on a waiting list, I saw a rheumatologist. Nice lady too. And within 15 minutes she gave me a diagnosis. Benign Joint Hypermobility, also known as Hypermobility Syndrome.
It is a connective tissue disorder. A lot of the joints in my lower body over-extend themselves (similar to when you are double jointed). I never thought anything of it. I thought everyone’s knees locked backwards, the way mine had since I was a child. Anyway, what happens is that my muscles in my joints are forever working extra hard to keep the joints in place, that they are becoming worn and tired. It is a genetic condition, and I have since found out that my younger sister, who lived in Melbourne, was diagnosed with the same condition six months ago. We hadn’t realised that it was the same thing, as for her it manifests in joints that are easily dislocated and ligaments that tear easily. For me, I just had very sore joints that I couldn’t stand on.
I have been given some medication specifically for chronic pain (which doesn’t have any narcotics or opioids, which I always hated), and been referred to a physio which specialised in a pain management, and they are going to revaluate me in six months.
But the truth is, I couldn’t care less what my diagnosis is, or whether it is treatable or not. All I cared about was that I had a diagnosis. I had a reason, an explanation, for what was going on with my body. One of my biggest issues in getting help and accessing disability services has been my lack of documentation to justify my needs. So many disability services require a definitive diagnosis before anything can be done. I still don’t have access to everything (Centrelink disability payments have a criteria that you have to be permanently disabled for the next two years…Now I am getting treatment, who know what state I will be in six months), but it means I can access some things.
So what happens now? I go to the physio, I take my medication, and enjoy my new wheelchair (a second hand chair which I paid for out of pocket, as I have neither the funding nor the money for a new one). That and continue my campaign for my apartment complex to install a ramp at the front gate, so I don’t always need to enter from the back alleyway.
By Suzie Day
Originally published on CatalogueThis.com
I go back to study next week. Unfortunately I haven’t had my hysterectomy yet, despite being on the public waiting list for over 90 days. My abnormal medical condition has gotten worse over the last year. It was irregular heavy bleeding and when I say irregular I mean it could be bleeding weekly to every few months ranging from a few hours of bleeding to even 3 months of constant bleeding.
That is still happening except the bleeding has become heavier over time. This year I am now getting severe abdominal pain which has required several emergency department admissions and strong prescription medication such as panadine forte and endone. I don’t like these medications as they make me confused, dizzy and sleepy which interferes with daily activities that I need to concentrate on as well as have balance for activities such as study, driving and going to the gym.
There is not only the physical pain that I have been through but also emotional torment by being a man with such a humiliating medical condition involving female reproductive organs. It has been very embarrassing having to out myself as trans* in such a way in emergency departments in front of confused triage nurses and members of the general public listening in.
The good news is that I am on the waiting list to have a hysterectomy done publically to fix my pain and bleeding. I am also perusing my options into suing a hospital who refused to help me because I have transitioned from female to male (which I have in writing).
My doctor who has exhausted all non-surgical options to treat my condition for over five years was furious that his medical recommendations were ignored by a senior management who haven’t even met me and refuse to name themselves. He was shocked that the senior management went against the medical professionals who recommended this procedure and that they are fine with letting me suffer in pain and lose large amounts of blood just because I am transsexual.
The fact that I have legal options means not only a lot to me but also to the trans* and trans ally community. In fighting back against this hospital we are saying that discrimination is no excuse to refuse medical treatment. I want them to know that there are costly consequences for discrimination in hope that policy will change so this does not happen to others. We are standing up for ourselves and refusing to be oppressed.
